Clare: No, no I mean he talked about what it was, he talked about, you know, that there were, because, because [son] was a bit older and because of how distended his tummy had been and all the sort of attempts at treatment that had happened along the way with trying to treat the constipation and everything he said that, I remember him saying that the reality was that he wouldn’st really know what he was dealing with until he got in there, literally and so he explained that there were a couple of different options, he explained that actually it might all be over quite quickly if he went in and found that because of the distention that [son] had suffered, that actually part of his gut was so badly stretched and affected that he might have to fit a stoma and would need that to kind of allow the gut to recover as much as it could before then doing the main surgery. So there was an option that this might turn into a two part surgery but either way it was gonna be better than the alternative. And then he went on to say but obviously if, if I can sort to out then I would like to do it in one go because, sort of the less times you do surgery the less you’sre putting the child at risk and so on and, and he explained that he would basically be getting biopsies as he went along, so it would make the surgery quite prolonged but he would, he would apply it with the greatest accuracy and diligence that he possibly could, so he would only remove the bowel that he absolutely had to remove and would leave anything he possibly could that was healthy but until he got in there, other than the initial biopsy for the diagnosis he didn’st really know what the extent of it was going to be until he got in there, and he was very clear about that, that, you know, on the one hand he could be out after, you know, kind of an hour but with a stoma fitted and then another operation or it could be several hours.

So, and he yeah he was, he was very good at kind of explaining that and again I think it just added to the whole, okay, we feel like he’s gonna apply some, some judgement here based on experience, that this isn’st gonna be just someone going in and just, you know, doing a butchering job, so that was good.

James: Yeah very measured, again very proportionate and very considered in how he approached it and I think those are the kind of things that you need at that stage, you need reality, cos you need the big hits, this will happen if you don’st do this, right okay good got that, okay so let’s talk about how we do it and then you, you go through those bits and bitesize chunks and you, again given that measured, that sort of warning that this guy isn’st fly by night he’s gonna makes sure he does this properly.

And these are the things that just you, everyone needs, you know, we’sre exceptionally lucky you know I don’st think everyone’s had the experience, well as we know from that meeting a few weeks ago, not everyone’s had that experience. So I think we were just exceptionally lucky to be geographically where we were, you know, and that’s not right that’s not how it should be, it should be universal in that respect. So yeah God bless him he did a spot on job didn’st he?

James: Well I think there was the extra stress cos you, you know, you think you were conscious there was something’s not quite right and that wasn’st helping. And it didn’st, you know, it didn’st help us personally on our relationship much did it. It did create a friction I think that’s, you know, that there’s no point in concealing that, it was quite hard work, you know. I was commuting quite a long way each day so, sadly enough I couldn’st be home when I wanted to be and that didn’st help really. You kind of sit there and think well with hindsight could I have been there for that? Could I, you know, it’s all, well I could do that, I suppose but, you know, had I been there and been that and said well hang on, Clare you know, you’sre absolutely right, but you’sre pretty tired, not to be dismissive but acknowledge that fact and do help us whoever you are I don’st agree with you and I do want to take this further and this is not for discussion this is going to happen would have probably taken the pressure off you, you know. It is difficult, you know it is very difficult, you know my two weeks paternity leave kind of went [pfft] in a flash, and suddenly I was back to three and half hours driving a day, you know, it’s just the way it is I guess.

Clare: And I think there is definitely something about, and it, you know, particularly because I was breastfeeding and everything, you know, I did feel like it was all down to me, you know, and I was sort of trying to cope with everything and juggle everything and you just kind of think well this is just one more thing and I don’st really know where to go with it, nobody seems to be really taking me seriously. I’sll just, just plough on then, you know, what choice have you got really.

I know you’sre working lives are mobile but how would you say the experience of [son] being ill and needing surgery has impacted on your working lives?

James: Well I think the organisation.

Clare: Quite a lot for me in the early days, I remember having to speak to my boss about it and trying to explain that, and particularly because we had that prolonged period where we didn’st really have a diagnosis and it just seemed like, you know, we were just being treated for just constipation, you know, so any time that I needed off, felt like a real battle and trying to sort of get taken seriously. But then even after the operation, it always felt like I was having to persuade my boss that this was serious, you know, and if I needed, and there’s one particularly long period of time, I think I must have been in hospital with him for sort of three, and a half weeks or something I don’st know whether that was immediately post-op or one of his starts with enterocolitis but we kind of had the option to take two weeks sick leave with a child, but then if you need any more than that that’s when it sort of starts to get difficult. And I remember my boss sitting me down and basically negotiating me out of using any further sick leave and saying that I needed to take normal leave and since then it’s made me incredibly conscious of keeping back leave just, always having just a few days spare a year which is really, you know, and especially now that we’sve got school holidays and stuff to contend with as well. I’m always, I’m always really nervous of using up leave on holidays and things because I’m always worried that I’m gonna need to take that time off work and that sick leave isn’st gonna cover it.

I’sve subsequently found out that I could have had, which is daft for somebody who works in HR but that I could have had a further two weeks additional compassionate leave, okay it would have needed signing off by somebody, you know, further up but, but I would have had that option. But yeah I don’st, I kind of felt rail roaded and, and in terms of if I’sve, you know, moved job or been promoted I’sve always had to go straight into my line manager and say, this is my scenario at home so you know, you know, I might get a call from the nursery or from school and I will have to drop everything and go. Hopefully now we’sre kind of past the point of really having to worry about that but, you know, it’s still in the back of my mind. And also I have to say to them, you know, we have regular hospital checks with him and, you know, I will wherever possible try and let you know in advance but it does always feel like it’s something I have to cover off straight away, I can’st, I can’st kind of leave it and I can’st, I sort of can’st keep my private life private.

That must be tough.

Clare: Yeah, it’s a bit odd, doesn’st feel entirely natural.

Jason: Yeah I mean when [son] was poorly in the lead up to the surgery I did take some time off work, it was only two weeks like when he was in hospital and that was okay, that was sort of reasonably received. But then there came a point when I had to actually articulate when I was supposed to be going overseas, and I had to articulate what the condition was for the person who was sending me overseas to look it up and then make a decision whether what I was saying was fair. And I kind of felt I kind of felt a bit aggrieved by that, and it was almost like when I was saying, you know, I’m sure there are people who would use it to get out of doing one thing or another but yeah that felt a bit unfair you know, you go cap in hand you say Look I’m sorry I know I’m meant to be going away I can’st this is not the right time’s you kind of hope they say, You know what, Jason, got it, we’sll cut off the background later but yeah, just go and do what you need to do,’s and that wasn’st the case so that was a bit galling. But since then the different roles I’sve been in on one occasion I’sve been master of my own destiny, so actually taking take time off when I like to and talk to my deputy and say I’m going run the gaff its fine. But actually since then it’s been, it’s been okay, you know, I do, like Clare had to sit there and say look, this is the scenario you know, it won’st be a question of Clare will cover it all because that’s not gonna happen, yeah historically that may have been the case, but we’sve worked out in time that’s not fair and not right so it might be that I have to go do X and Y and so you need to be prepared for that. I have to say my options has been pretty good, you know, that’s been quite positive from my perspective, not so for you necessarily but

Clare: I think, I think we’sve, we’sve got better at keeping work, our respective, work informed that of what the situation is and what could happen and we’sve found ways of kind of talking it and it raising it whatever and generally the kind of lesson has been to raise it as early as possibly really but they just know and then you don’st need to try and have that argument or discussion about it later which is what I got caught out with really badly early on.

And just talk me through the beginning of that period, so you had a, a meeting with the surgeon who gave you the results and explained what the plan was?

Clare: Yeah and then I can’st remember whether it was then and there or if we’sd, I know we’sd sat down having understood what it was and written out the most enormous list of questions and I don’st know if it was at that appointment or a subsequent appointment but we took the list of questions in.

James: No you’sre right, I remember.

Clare: And went through them with the consultant and actually again that was another thing that he very patiently sat and went through every single one of those questions, however stupid they were, you know.

James: How many times he’sd heard them, no doubt.

Clare: Yeah and it didn’st.

James: He wasn’st fazed, he wasn’st awkward he was just Okay, let’s do it’s.

Clare: And even to, you know, we had questions in there that were kind of, does he even have to have the surgery is there another option, you know, can we wait, can we wait until he’s older, you know, we’sve got him this far now, you know, do, is it of any benefit for him to be bigger and stronger, you know, and all these kind of things and

James: I think we even had survival rates, you know, is there a risk of death in surgery. Yeah it’s not something you want to say but I think it was, we sat down we said, you know, we have to be prepared we’sve got to sit down now and actually consider-

Clare: You know, we needed to understand the position and actually his, his honesty and how forthright he was with us in a very professional, very calm manner was, was really.

James: Spot on.

Clare: Yeah.

James: It was reassuring in the sense that he was confident in his replies to us

Clare: Yeah it was that as well.

James: There was no kind of ambiguity umm and arr, you know, this might be difficult to answer, there was none of that, it’s that and I know that because I’m a bloody good surgeon. I mean he didn’st say that but you could tell.

Clare: He didn’st say as much but he definitely got that across yeah.

James: Fine, good [phew].

Clare: I’m a real expert in my field, we just, you just knew and the confidence that, you know, because you’sre handing over your most precious thing to this person who is going to put them under anaesthetic and disappear into an operating theatre with them and you hope they’sre gonna come out the other side. So to have that level of reassurance.

James: Confidence, not arrogance, confidence not arrogance, got it absolutely right. If they’sd been arrogant, that probably wouldn’st have helped but just that warm confidence in his responses just, for me and I think for you too was spot on, perfect answers, spot on.

Clare: I was never gonna be that happy about handing him over for it ever but-

James: No but relatively speaking.

Clare: But it was the best it could be.

Clare: Yeah and then I can’st remember whether it was then and there or if we’sd, I know we’sd sat down having understood what it was and written out the most enormous list of questions and, and I don’st know if it was at that appointment or a subsequent appointment but we took the list of questions in.

James: No you’sre right, I remember.

Clare: And went through them with the consultant and actually again that was another thing that he very patiently sat and went through every single one of those questions, however stupid they were, you know.

James: How many times he’sd heard them, no doubt.

Clare: Yeah and it didn’st.

James: He wasn’st fazed, he wasn’st awkward he was just Okay, let’s do it’s.

Clare: And even to, you know, we had questions in there that were kind of, does he even have to have the surgery is there another option, you know, can we wait, can we wait until he’s older, you know, we’sve got him this far now, you know, do, is it of any benefit for him to be bigger and stronger, you know, and all these kind of things and.

James: I think we even had survival rates, you know, is there a risk of death in surgery. Yeah it’s not something you want to say but I think it was, we sat down we said, you know, we have to be prepared we’sve got to sit down now and actually consider

Clare: You know, we needed to understand the position and actually his, his honesty and how forthright he was with us in a very professional, very calm manner was really

James: Spot on.

Clare: Yeah.

James: It was reassuring in the sense that he was confident in his replies to us.

Clare: Yeah it was that as well.

James: There was no kind of ambiguity umm and arr, you know, this might be difficult to answer, there was none of that, it’s that and I know that because I’m a bloody good surgeon. I mean he didn’st say that but you could tell.

Clare: He didn’st say as much but he definitely got that across yeah.

James: Fine, good [phew].

Clare: I’m a real expert in my field, we just, you just knew and the confidence that, you know, because you’sre handing over your most precious thing to this person who is going to put them under anaesthetic and disappear into an operating theatre with them and you hope they’sre gonna come out the other side. So to have that level of reassurance.

James: Confidence, not arrogance, confidence not arrogance, got it absolutely right. If they’sd been arrogant, that probably wouldn’st have helped but just that warm confidence in his responses just, for me and I think for you too was spot on, perfect answers, spot on.

Clare: You were very focused on sort of getting the

James: I just wanted to fix it.

Clare: Getting it dealt with yeah.

James: I didn’st want to get involved in emotions because that would not help because if I start crying, you know, as you were, then we’sre both just crying and nothing’s happening so I was being, it was actually bloody hard to be like that you know, it’s fine to do it in a work sense, you know, and we do that all the time, but actually when it’s something that important to completely remove yourself from the emotion and just be tell me what I need to know, you know, you mentioned the questions there, that was actually my idea to do kinda do like a little thing on it and my priority at the time was to kind of help [mother/wife], at the time kind of focused on something other than the negative. But I think yeah having that, that appreciation of how you should manage yourself.

Clare: Some support with that would be really nice.

James: But also how you support your other half who is probably at that point in time more close to the baby than you are because of, you know, breastfeeding, you’sve just borne this child all this kind of stuff how you manage them and help them is incredibly hard. In the build up to, during and after, I would suggest. So yeah I think that might be something to consider, I don’st know how it will work maybe that’s up to me to arrange.

How, just tell me a bit more about that, what would have, what would have been helpful, what, something to allow, something to allow you to feel emotions or?

James: No, no I don’st- I was so not at the point where I wanted to feel emotions. Cos that wasn’st helpful, it probably would have been in reality.

Clare: I think some sort of talking therapy or something might have been useful to just support the process between, okay you’sve had this big diagnosis and you’sre gonna have this operation and, you know, what happens after that is still quite up in the air albeit, you know, there’s a worse option but, you know, we still didn’st really know quite how it was all gonna pan out and what the implications were gonna be longer term and we just kind of trying to get our heads round it all. But just, you know, the sort of talking therapies that you hear about I think probably would have been useful, it would probably be quite difficult to get people to take that up but I could imagine people would be quite kind of nervous of that but even just, you know, some links with, with the support groups with the parents groups. I mean I know that hospital now it was literally forming when we were there being treated after the operation the support nurse started to do a lot of very active work setting up support groups but and putting you in touch with a couple that were kind of just starting themselves that had been sort of brewing.

And actually it would have been really helpful to have been put in touch with them before the operation and I know now from those support groups that there are quite a lot of mums and dads that come onto the Facebook pages or the website or the e-mail groups and will say, we’sve just been given this diagnosis we have no idea what it means we’sre expecting this big operation and, and I look back and I think of our experience and I see their experience and actually, I think it’s probably really good for them that they’sve got that now, they’sve got that outlet, they’sve got other parents with a shared experience but also with a really good perspective, because most of us that are still involved in it, you know, that many years on are able to say I know it seems like the worst thing in the world right now but it’s not, it’s gonna be okay, you know, one way or the other.

And do you find it hard talking to friends?

Yeah, yeah there were, again you just start to feel like you just sound like a broken record in fact it’s been really funny getting involved with the, the research project and even these interviews, because apart from between us to a reasonably large extent, I think I have just sort of stopped really talking about it to people and yeah it did, cos you kind of get sick of hearing yourself talking about it as well and it starts to not be very healthy, you sort of think, we’sre looking forward now, you know, this is just going over old ground. but certainly going through it all I think I did try and talk to friends about it, but you become very quickly aware that your experiences as a mum, you know, rearing your child is very different to theirs and, and you’sre conscious that they aren’st really going to know what to do with that information. yeah one of my, one of my really good friends is a GP and actually it was really good talking to her, because I knew that she got it medically and I didn’st have to kind of explain all the details and actually she was one of the first people who said to me, you know, I think this is actually making you feel quite low and that was, that was quite important I think for me as well.

James: He was really poorly and we went to [hospital name] and we got admitted and they said can’st deal with this, this isn’st, you know, and the lady consultant who we’sd seen before saw him and said this isn’st for us, blue lights to [city] and admitted into there into the medical ward. I mean they did all the kind of good bits and things, they said, well, you know, Clare’s already said it, but you know, virus’s kicking around, you know, a plausible answer I guess for a child who’s not presenting with the wider bits. And we kind of kicked our heels for a couple of days and they were treating this virus.

Clare: It just kind of wasn’st going anywhere.

James: And so we were sort of saying, okay we’sre not really seeing much of an improvement here and actually his weight is starting to drop quite quickly, you know, this is quite a concern.

Clare: And they knew, they knew his history as well, obviously that I’sd come from, from [city] that there was other stuff.

James: Yeah.

Clare: In the background that there’sd been concerns about and by that stage we were a bit more gemmed up I think on Hirschsprungs* as a possibility, I’sd certainly read up on it a bit more.

James: I think there was a point at about day three of us being there and obviously Clare, you were exhausted by then weren’st you because you were up with [son] a lot. I spoke to the governor doctor, there was a consultant I remember, a guy came to see Clare. I took him outside and I said, Look I’m really sorry I don’st mean to be rude about this, but you’sre wrong, this is not right, you now need to start doing something or I’m gonna, frankly I’m gonna make a complaint because this is just ridiculous we have reached our limit.s And fair play to him, I mean, he was a bit obtuse about it to start with but after that he did, he went away and we got referred.

Clare: No I think it was diagnostic, his initial diagnostic tests was done maybe a week later or two weeks later.

James: Yeah, so biopsies.

Clare: And that was, yeah so and the first lot of biopsies was the, was probably the most horrific because that was the one where they do it with what’s probably best described as a thing that looks like a gun [laughs] which obviously they insert into the bottom and then it takes the biopsies. And that was pretty horrific I mean I’m not.

James: It was inconclusive, the first round was inconclusive-

Clare: Yeah I’m not squeamish at all and yeah they, it came back as inconclusive.

James: And we were shocked we thought, wow okay suddenly we have made this into something more than it is, you know, a complete surprise.

Clare: Yeah that was an awful moment actually.

James: Okay so we’sre back to square one.

Clare: So you’sve put your child through this completely horrific procedure and then you’sre told well it’s inconclusive but they did say that as an inconclusive, that was still enough to then put him forward to do it under general anaesthetic because they would then be able to obtain better samples because they did say that sometimes with this particular method they can be anomalies in the sample taking anyway and just kind of lots of issues really and I think, again this might be just perspective on it looking back but I got the impression as well that because it was when he was that little bit older that they kind of felt that it was more likely to be flawed in a way so they didn’st, they didn’st actually seem entirely surprised that it was gonna need a further check.

And he’s eight months at this stage is that right?

Clare: Yeah.

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

James: Yeah, I mean, we got discharged and I called to see because we had about two weeks we went down to the beach and we- it was a very odd period actually because it was waiting for something to happen, we knew that we were going to go to surgery, you know, he’sd determined that it was Hirschsprungs* and I’m going to do this procedure to have a pull through’s of course at that stage you didn’st know what it was so, you know, much [types with hands] first time of finding out [yeah look at all the various options but fine yeah that’s what he wants to do.] We had this really odd kind of intermission didn’st we were, well I don’st know about you, I always felt knowing the depth of the surgery almost felt like this was a, kind of a, he might well go into this and things might not go well. So we’sre gonna have this two weeks, we’sre gonna have a really good two weeks and we did lots of things didn’st we.

Clare: Yeah.

James: We’sve got a picture in the hall, there’s a picture I took of him when he’s strapped to your tummy on the beach, beautiful sunny day it was perversely great.

Clare: It did feel, it felt like walking a tightrope because we now knew what the condition was but we also therefore knew what the risks were and so it kind of felt like every day, you know, I was kind of aware- I have never particularly been one of those mums who stands over their children, checks if they’sre still breathing at night kind of thing and, you know and I haven’st with our second either but I remember for that period of being much more like that, I wanted to just make sure that he was alright every second of the day and if there was any little thing and that, you know, by that stage they’sd said to us about, you know, if you’sve got any doubts pick up the phone get in, have a wash out, you know, we can, we can treat it straight way sort of thing.

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

Clare: I think there’s another piece that came into play for me as well is that it’s quite hard to challenge medical professionals and you were definitely the one all the way through really that was a lot stronger about that and a lot more determined to challenge. You know, I would have another midwife visit or another health visitor come and see us at home and they would be sort of saying well you know, so how’s it going and I would explain the problem and they would- not fob me off cos that makes it sound like it was a bit deliberate but, you know, they would kind of give me all these reasons and it still sounded very reasonable and actually an awful lot of it was put down to the fact that I was breastfeeding.

And then he would get home and sort of hear me relate this back and be sort of saying well that sounds like complete rubbish, you know, I think you need to press again on this, you know, next time you see them, say, let’s see how it goes but let’s press again, lets press again. And I found it very hard to question medical professionals confidently. Because I was aware I was a new mum and I think the other thing is that you know, this is your child and you want them to be perfect and you, you’sre the last person that wants to question whether there’s something wrong about them, you know, it just.

And that’s, to me that’s the point when things started to change, albeit there was still a lengthy process after that or what felt like a lengthy process. But at the GP appointment we, so myself and my son, saw the GP and, and she was fantastic, you know, she ran through all the checks and everything and I, by that stage we’sd, we really started to get very frustrated with what we were getting from the health visitors and we could see that [son] was quite poorly and I’sd had him, at that point I think I’sd had him actually throw up a couple of full feeds as well and although I’sd heard from other mums, you know, Oh yes, my child’s throwing up,’s you know, this was right across the room.

James: Yeah projectile.

Clare: There was just, it was like something out of the Exorcist or something so I, I took the opportunity at that appointment to say to the doctor, look, you know, there’s, we’sve had all these visits and everything but he still hasn’st really done a proper poo and I’m, you know, I’m now really quite worried about it. So she examined him and actually during that examination she was very, very thorough and then she sat me down and she said Okay, I’sve obviously had a really good look at your son and actually I am a bit concerned, you know, I agree with you, things are not right. So we definitely needed to take this as bit further’s and then I, she then said something along the lines of a, I can’st remember exactly what but something along the lines of, You’sre obviously an intelligent mum I’m sure you’sve been doing some research and, you know, the internet being what it is and everything so you’sre, you’sre probably getting a feel for some of the conditions that this could be and I think this could be Hirschsprungs*, it would be a really unusual presentation because he has put on weight albeit it’s dropped off, he does look, you know, a healthy good colour, you know, he is still feeding etc. etc. but there are other things here that are pointers and I think it’s worth us getting him checked out.s So I said, Okay’s and I had seen Hirschsprungs mentioned so I sort of- on various internet things- so I did have an idea of what it was about and what it might mean but was trying very much to kind of go right okay I’m not going to panic. But what then slightly panicked me was that she then said, I’m just gonna go and make a phone call’s and she went off and then she came back in the room about five minutes later and said Right I’sve spoken to the paediatric department at the hospital I want you to go straight up there this afternoon.s So she had obviously thought that having got to the six week point with everything that had happened that it’s was significant enough to get us seen straight away.

James: And this is probably one of those interventions that were actually incredibly important and positive.

Clare: Yeah, amazing.

James: And I wasn’st there.

Clare: Yeah.

James: But the way she handled it was seemingly very good.

Clare: Yeah.

James: And, you know, it wasn’st inflammatory was it, it was a, I’m worried so let’s, let’s just’s-, you know.

Clare: Yeah she was very calm and very matter of fact about it, I really remember that about her as a GP and the way that she kind of dealt with us.

James: And actually a GP who is not a paediatric specialist necessarily to pick up on that is excellent, I mean that, you know, that is baseline brilliant.

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.